National Running Day 2015: Looking Back, and Ahead

Published: June 3, 2015 ~ 0

By Laura Edwards

Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.

That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. continue reading →

Running for Taylor in 50 States: South Carolina

Published: October 25, 2014 ~ 3

By Laura Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

In August, I placed fourth in Oregon’s 13-mile Crater Lake Rim Run. Five weeks ago, I placed second in Tennessee’s Great Smoky Mountains Half Marathon.

This morning, I hopped across the border to South Carolina for the Great Pumpkin 5K and state number three.

I picked the race because of its proximity to Charlotte; the Great Pumpkin 5K is run mostly on or near the Winthrop University campus in the town of Rock Hill, less than 30 minutes from where all of my family lives in south Charlotte. Taylor’s health is declining, and I haven’t seen her at a race in a long time. As much as I love running, I always try to remember why I run. I picked the Great Pumpkin 5K as my South Carolina race because I wanted Taylor to be the first person I hugged at the end.

Usually a stickler for race preparation, I broke almost all of the rules this week. I stayed up late every night and gorged on junk food at an office Halloween party on Friday. I ran very little in the two weeks leading up to the race after suffering a bad ankle sprain hiking in Utah earlier this month. It was still sore when I went for a quick jog this week, but I just gritted my teeth and watched out for potholes.

I have a closetful of performance running apparel. But two hours before the race, I pulled on a long dress made of fake crushed velvet and purple sequined lace and a floppy, matching hat. The stuff wasn’t made to wick sweat.

But it was Taylor’s Halloween costume three years ago – the last time she went trick-or-treating. That made it magical.

I got out to a quick start. I slowed a bit midway through the race as my ankle began to throb. But I got a boost from the spectators sprinkled along the course as they shouted encouragement. Running a 5K in full costume is an effective way to attract attention. I wish I’d had a handful of Taylor’s Tale wristbands to launch at them; alas, the purple witch costume doesn’t have pockets, but I can yell “Visit taylorstale.org!” like my life depends on it.

With about half a mile to go, I knew I was near the front of the pack. I found another female runner to “draft.” I settled into a comfortable pace and waited till the final turn to pass her and accelerate into a full-on sprint. Don’t knock the purple witch dress; it’s more aerodynamic than you’d think.

I crossed the finish line 12th overall and first in my division.

I got a big hug from my husband, John, and my dad. Later I got a hug from the runner I’d passed in the last half-mile, a woman named Dianne in the masters division. She ran Thunder Road last year, and she knew our story. I gave her the wristband on my arm as we waited for our age group awards and the morning sun warmed our skin, and silently I reaffirmed the importance of these runs for the thousandth time.

But I never got to hug my sister at the finish.

Nothing about Batten disease is easy. But 2014 has been an especially rough year for Taylor. This year, my sister stopped talking. She ran two 5Ks blind, but now she’s in a wheelchair. She got a feeding tube in June. She’s been to the emergency room multiple times. Batten disease is a monster. And Batten disease is winning the battle for my sister.

All week we’d hoped Taylor would be able to come to the race, because that would mean she was having a “good” week. But yesterday was a really bad day. Yesterday marked another milestone for Taylor, and in my sister’s world, milestones aren’t a good thing. Milestones represent another rabbit hole; another point-of-no-return.

I hate Batten disease so much. I hate what it’s doing to my sister and the people I love. I hate that the Halloween Taylor wore the purple witch dress feels like a million years ago, because figuratively speaking, it was.

But I’ve got more races to run and stories to tell, and Taylor’s Tale has great work left to do. While I don’t know what the future holds, I know Taylor and I have tomorrow. And tomorrow is always something worth fighting for.

Make a tax-deductible gift today and help write the happy ending to Taylor’s Tale.

2013: The Memories

Published: December 29, 2013 ~ 2

By Laura Edwards

As the sun sets on 2013, our seventh full year fighting the war against Batten disease, I know in my heart that in many ways, the story has just begun.

On Jan. 4, we remembered my Grandma Kathryn, an angel in life who earned her wings on Christmas Day 2012. My grandmother, who loved her grandchildren more than she loved her own life, urged us to fight the demon from the moment we got Taylor’s diagnosis in the summer of 2006. She had no way of knowing that she, too, had a tragic neurodegenerative disease lurking inside of her. There was nothing she wanted more than an answer for the disease that dared to steal her granddaughter’s life. I fight for Taylor, but I fight for Grandma Kathryn, too.

On Feb. 28, World Rare Disease Day, Taylor’s Tale announced that we had joined an international coalition to fund gene therapy research at the University of North Carolina. Dr. Steve Gray and his mentor, Dr. Jude Samulski, are not the only talented scientists working on Batten disease. But I believe in them because of 1) what I’ve learned about the science of Batten disease in seven-plus years, 2) what I’ve been told by their respected peers and 3) something in my heart that I can’t describe. And I believe in my heart that if we can continue to fund this project, we’ll have a clinical trial for kids like Taylor in a few short years.

For the fifth consecutive year, music students and teachers held a playathon for Taylor’s Tale in Raleigh, N.C. Their efforts raised thousands of dollars and a great deal of awareness for our fight against Batten disease. I love these kids and their teachers. This event is special.

In April, Taylor’s former classmates at The Fletcher School held their second cardio craze fundraiser with local celebrity Andre Hairston. They turned a school gym into a sea of love and hope.

On June 1, I announced my plan to run the Thunder Road Half Marathon blindfolded to honor Taylor and support the fight against rare diseases.

Eleven days later, Mom spoke at the National Institutes of Health (NIH) on behalf of Hannah’s Hope Fund. Mom and Lori Sames, founder of Hannah’s Hope, delivered amazing speeches, and Hannah’s Hope gained approval from the Recombinant DNA Advisory Committee (RAC) in its quest to begin a human clinical trial for another childhood neurodegenerative disease called GAN.

This year, Taylor’s Tale also welcomed new board members. Our first- and second-year board members have made an incredible impact on our fight against rare diseases in 2013.

During the five and a half months that I trained to run 13.1 miles blindfolded, I learned more about my sister’s dark world, and myself, than I could have ever imagined. And race day, Nov. 16, is an experience I’ll never forget. No words of mine can describe what happened at the Thunder Road Half Marathon for the fight against rare diseases.

In many ways, 2013 has been the most successful year for Taylor’s Tale since my mom and I founded it with a small but determined group of volunteers in a Charlotte living room seven years ago. We connected with members of Congress and developed contacts with other key individuals. We partnered with a leading patient advocacy organization called the Global Genes Project and were adopted by a wonderful, local philanthropic organization called Playing for Others. We’ve raised more money in other years, but we’ve never extended our reach in such a big way, or had this much excitement surrounding a funded project, or harnessed the power of a great story the way we did with the run…until now.

But while 2013 has been an incredible year for Taylor’s Tale, it has been a difficult year for Taylor in every way. When we founded Taylor’s Tale, my sister was an animated, spunky, running, playing, talking, singing 8-year-old with most of her vision. But Batten disease is a demon. Taylor has a beautiful singing voice, but she can no longer talk. Her two 5K finishes inspired my blindfolded half marathon, but she can no longer walk without assistance, and her wheelchair is on order. My sister taught herself to read before kindergarten and learned Braille after she went blind, but she can’t read or write anymore. My sister can’t use a fork and spoon, because Batten disease stole her fine motor coordination. I can see the sadness in her eyes, even though her eyes can’t see me.

Batten disease has won every battle.

But it will NOT win this war.

The Greatest Race

Published: December 22, 2013 ~ 0

By Laura Edwards

Thanks to my friends at Run For Your Life, who hooked me up with a free pair of purple Saucony Triumphs and some other swag for putting together one of the biggest – and most awesome – teams at Charlotte’s Thunder Road Marathon. I also snagged a pair of limited edition, stereo-Bluetooth earphones from yurbuds.

running gear

I don’t think anyone’s ever made a shoe quite like the Brooks Glycerin (the only shoe I’ve worn in a race for three-plus years), but I’m willing to branch out in the name of purple and variety. And the earphones are just cool.

I’m already filling my race calendar for the coming year, and though I’ll never be able to match the epic journey of my blindfolded run for my sister at last month’s Thunder Road Half Marathon, I couldn’t be more excited about running for Taylor and the fight against rare diseases in 2014.

Less than a week after I kick off my sixth year of running for Taylor with the Charlotte 10 Miler, Taylor’s Tale and other organizations from more than 70 countries will recognize Rare Disease Day. On Feb. 28, 2014, the seventh annual Rare Disease Day will provide a platform for patients, patient representatives and others to raise awareness about rare diseases and the huge impact they have on patients’ lives. Since its founding in 2008, Rare Disease Day has contributed to the development of national plans and policies in many countries, including the United States. Last year, Taylor’s Tale sent two board members, including my mom, Sharon King, to Washington to attend sessions, visit with legislators and advocate on behalf of the 30 million Americans who suffer from a rare disease.

As my mom and her travel buddy, Debbie Carney, forged relationships with key decision makers and gained valuable knowledge, the rest of the Taylor’s Tale team joined with Dr. Steve Gray of the UNC Gene Therapy Center to announce co-funding for a two-year research project that, if successful, could lead to a clinical trial for children with two forms of Batten disease. Ten months later, Dr. Gray’s work is on track, and our team is focused on securing additional funding to help move the project past the first two years and toward our goal of a treatment.

My husband and I are hosting Christmas this week. This weekend, we did some December “spring cleaning” to get our house in shape for the holidays. I pulled all of my race medals down from the plastic hook on the office closet door, where I’d thrown them up in a haphazard fashion. I counted seven from 2013:

As I spread them out on the carpet, I relived each race, from a rain-soaked Charlotte 10 Miler in February to a rain-soaked Huntersville Half Marathon last weekend. I realized I set a new personal record (PR) in every race except the one I ran blindfolded. And I felt Taylor’s absence at every single one. As I sat alone on the floor and ran my fingertips over those medals, feeling the raised details of each one as a blind person would, I thought about how much my sister has declined this year.

I got faster in 2013 – a lot faster. I owe it to a good friend who ran my first race with me and helped me – a born sprinter broken by soccer – believe I could be a distance runner; to the shoes that were made for my balky ankles and feet; and to the doctor who convinced me that lower mileage and cross training might actually make me better on race day. But more than anything, I owe it to my sister, who gives me wings when my lungs burn and my body wants to quit. More than anyone else, my sister, who can no longer walk without assistance, taught me how to fly.

I have big plans for 2014, both on and off the race course. I intend to keep setting PRs. But at the end of the day, my medals are just worthless chunks of metal.

Dr. Gray and others are racing to save kids like Taylor and the millions of people fighting a rare disease.

Theirs is the greatest race of all.

Running for Taylor: Guest Post for Deb Runs

Published: December 11, 2013 ~ 2

By Laura Edwards

In August, I connected with Debbie at Deb Runs. A wife, mom, runner and personal trainer, she leads a running group called the Cruisers. Her posts are entertaining and inspiring! If you have a chance, please check out Debbie’s blog.

My sister’s story had an impact on Debbie, and she wrote about our journey on her blog after going on a 6.2-mile run in honor of Taylor’s 15th birthday. She followed my training for the Thunder Road Half Marathon, and earlier this fall, she asked if I’d be interested in writing a guest post for her blog after the race. Of course, I said yes! Following is the post I wrote that Debbie published on her blog earlier today.

In 2006, my then 7-year-old sister, Taylor, was diagnosed with a rare, brain-based disorder called Batten disease. Over time, kids with Batten disease lose their vision, cognitive skills, speech and other basic functions, like swallowing and walking. There is no known cure or effective treatment, and the disease is always fatal.

Two years after Taylor’s diagnosis, my sister, already blind and suffering from other effects of Batten disease, signed up for Girls on the Run at her school. An older student named Mary-Kate served as her sighted guide. Mary-Kate and Taylor each held one end of a jump rope so that Taylor could run like the other girls.

Taylor, Mary-Kate and their Girls on the Run team ran their first real 5K at Charlotte’s Thunder Road Marathon on a frosty day near the end of 2008. Mary-Kate told us Taylor stumbled and fell a few times, but each time, she pulled herself up and insisted on finishing the race. The pair reached the finish line in just under an hour.

To this day, watching my blind sister cross the finish line at Thunder Road remains one of the most moving things I’ve ever witnessed. I played soccer for 20 years and always ran to stay in shape. But running took on a new meaning for me that day at Thunder Road, and that following spring, I started running races for Taylor. I ran my very first half marathon at Thunder Road, at the site of her incredible feat, in late 2009.

It’s been nearly five years since I watched my sister and Mary-Kate cross the finish line at Thunder Road, and though my sister remains as brave as ever, she’s no longer able to run. To honor her courage on the racecourse and support Taylor’s Tale, the non-profit organization I co-founded, I decided to run the Thunder Road Half Marathon blindfolded.

The race was scheduled for Nov. 16. On June 5 – National Running Day – I laced up my Brooks shoes and jogged to the home of Andrew Swistak, my friend and sighted guide for Thunder Road and a staff member at the school Taylor attended during that magical time with Girls on the Run. I experienced dizziness for my first few minutes as a blind runner, and I sprained my ankle when I got cocky and tried jumping a curb. But I didn’t fall, and by the end of the run, I knew we could cross the finish line on race day, just as Taylor did.

In total, Andrew and I trained together less than 20 times over a five-month span. I also cut down on my mileage in general, knowing that finishing the race and supporting the fight against Batten disease– not finishing with a great time – were our primary goals. Along the way, we managed to pick up extensive media coverage for our cause, including multiple TV stories, local print stories, online coverage and the cover story of a statewide magazine.

Finally, race day arrived. I headed uptown with Andrew and Dr. Steve Gray, the University of North Carolina gene therapy expert whose research Taylor’s Tale is co-funding; Steve would run the half marathon with us. My mom, president of Taylor’s Tale, and my husband, John, rode along; they’d run the 5K and help Taylor’s Tale have one of the largest teams at Charlotte’s largest road race, with 57 official members and a huge cheering station at the race’s final turn.

Just before the race began, I did one final TV interview and took a few pictures for another magazine. Then, we were off! We started with the early starters group, 30 minutes ahead of the official start, for safety reasons. The pace car forced us to run more slowly than we would have liked, so we lost time over the first two miles. After what felt like an eternity, he cut us loose, and we found our stride.

For most of the race, I ran “tethered” to Andrew by a two-foot bungee cord for safety. But at times, when he felt that it was safe to do so, he took the cord and allowed me to run untethered. At one point, we ran down the center of one of Charlotte’s most beautiful streets, a four-lane road covered by a canopy of huge, old trees and lined with stately homes. I ran untethered for what felt like ages, and during that stretch, I felt as if Taylor was with me, lighting my way.

Despite our slow start, the end came in less than two hours – almost too soon. As we approached the Taylor’s Tale cheering station at the race’s final turn, Andrew again took the bungee cord, and I made a 90-degree turn on his verbal direction alone. Close to 100 people clad in Taylor’s Tale purple and glitter, including 70 teenagers from a wonderful partner organization called Playing for Others, chanted my name as we ran past the station. And as we made for the last stretch and I reached for that last burst of energy, I knew I wanted to cross the finish line untethered.

There were no other runners around Andrew, Steve and me as we approached the finish line – something I didn’t learn until later, when I saw Steve’s photos. And during that last stretch, time stood still. When we got close to the timing mats, I picked up speed; I always sprint to the finish line in my races. And amidst the cheering, I heard Andrew yell, “Jump!” and then, “Jump!” for the second mat. And then, at 1:59:58, he pulled me to a stop, and I lifted the blindfold, and the soft light of the overcast day came pouring in, and I saw my mom and melted into her, both of us crying. I don’t know how long we stood there in that position, but when I opened my eyes, I realized we were engulfed by those 70 teenagers from our cheering station; they’d taken off after us when we made our final turn and surrounded us in the finish area. It looked like a scene from the end of a Disney movie, and I half expected them to carry us out of there.

Photo credit: Well-Run Media+Marketing, LLC

As the world and reality came rushing back to me, it hit me that the only thing missing from the finish line was my sister. Taylor – my reason for running – wasn’t well enough to come to the race. But even if she could have made it, she’s blind, so she wouldn’t have been able to see how we turned Charlotte into a sea of purple and love for her.

Team Taylor’s Tale helped make this year’s Thunder Road race a day that will have an incredible impact on the fight against Batten disease and other rare and genetic diseases, and it will forever live on in our hearts. We haven’t crossed the ultimate finish line yet, because we don’t have an answer for kids like my sister. But I believe we can write the happy ending to Taylor’s Tale, and I’ll never stop running – or fighting – until we do.

You can donate to help save kids like Taylor here. Taylor’s Tale is a 501(c)3 non-profit organization, and all gifts are 100 percent tax-deductible. Our website makes it easy to give and provides other ways you can get involved in the fight against rare and genetic diseases.

Stay in touch and spread the word by liking us on Facebook, following us on Twitter and Pinterest and following my blog. Learn more about Taylor’s Tale at http://www.taylorstale.org.

Questions:

Have you ever tried to close your eyes briefly while walking or running outside to experience the sounds and smells around you?

Do you have any questions about Taylor’s Tale or Batten disease?

Do you know anyone fighting a rare disease (rare diseases affect one in 10 Americans!)?

Turn it Purple

Published: November 15, 2013 ~ 0

By Laura Edwards

Thanks to a West Coast friend, Julie Siebel, and a Charlotte friend and father of two sons fighting Batten disease, Chris Hawkins, for this idea. My mom and I hope you’ll help us get it moving.

Chris will wear purple and run the 5K for Taylor’s Tale at Charlotte’s Thunder Road Marathon tomorrow, but while Julie won’t be able to run with Team Taylor’s Tale, she’ll also be wearing PURPLE in support of our efforts to bring awareness and funding to Batten disease and other rare diseases. Chris asked his friends to use social media to share photos of themselves dressed in PURPLE even if they couldn’t run or cheer at the race.

Thanks for the inspiration, Julie and Chris! I’m asking all of my readers to put on some PURPLE and share a photo with Taylor’s Tale via Facebook, Twitter or both tomorrow, Nov. 16. By turning Facebook and Twitter purple, you can help us support not only kids with Batten disease, but also 30 million Americans and 350 million people worldwide suffering from rare diseases. Then, go one step further. Ask YOUR friends to post a photo of themselves in PURPLE and share the reason behind it.

There are about 7,000 different types of rare diseases, with more being discovered each day. Ninety-five percent of them don’t have a single FDA-approved drug treatment.

We can do better. And it all starts with telling a good story.

That’s it from me until after the race. It’s go time.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Click here for details about the official Taylor’s Tale cheer station at Thunder Road!

The Finish Line

Published: November 14, 2013 ~ 4

By Laura Edwards

In less than 36 hours, I’ll cross the finish line of Charlotte’s Thunder Road Half Marathon, completing the biggest road race of my life. I’ll take off my blindfold and let the light come pouring in.

We won’t have an answer for kids like Taylor by Saturday afternoon. But I hope that my run, and the runs of all 50-plus people who will put on a purple shirt for Team Taylor’s Tale at Thunder Road, will help us get closer to the finish line in the race that really matters.

Thanks to all those who will help us turn Thunder Road purple for Taylor on race day.

Thanks to all of our supporters who will rock the cheer station at the final stretch and give ALL runners the boost they need to get to the finish.

Thanks to Dr. Steve Gray for dedicating his life to finding treatments that could save people like my sister. He has the talent and the passion to lead us into the light.

Thanks to my guide, Andrew, who helped me find my way in the dark.

Thanks to my family, who always believed in me.

Thanks to my sister, whose bravery inspires me every moment of every day.

It IS possible to find beauty in the midst of a tragedy. Focus on what’s good, appreciate the support of others, work hard, keep your eye on the finish line, and never, EVER stop believing.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Online registration is closed, but you can still register at the race expo on Friday, Nov. 15. Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, click here for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

Thunder Road: The Details

Published: November 7, 2013 ~ 3

By Laura Edwards

I hatched the crazy idea to run a half marathon blindfolded for my little sister all the way back in the spring, and I ran blind for the first time five months ago. I’ve never spent this much time training for any race, and I can’t believe the big day is almost here. But in just nine days, I’ll put on a blindfold and run the most important 13.1 miles of my life to honor Taylor’s courage and support the fight against rare and genetic diseases. A lot of you will be part of the effort on race day – as a runner, cheerleader or supporter from afar. With some help from the Taylor’s Tale team and our friends at Run For Your Life, I’ve been tying up loose ends behind the scenes between training runs, media coordination and regular life stuff, like work and sleep. Check back throughout the next week for last-minute details, but the following should provide most of the information you need to be part of the effort on Nov. 16:

If you’re running:

You have until Sunday, Nov. 10 at 11:59:59 ET to register online here. If you miss the deadline, you’ll have to register at the race expo on Friday, Nov. 15. There is no race day registration. IMPORTANT: on the second page of online registration, under the option that says “Event Groups/Teams,” select “Taylor’s Tale” as your team. Note: if you already registered and did not select Taylor’s Tale, contact me using this form.
Thanks to the generosity of two donors, we will have the ability to provide Nike Dri-FIT shirts in Taylor’s Tale purple to the first 40 runners who register to run for Taylor’s Tale. If you have officially registered to run, please contact me using this form with your preferred shirt size (men’s sizes only) and the best way to get in touch with you on Friday, Nov. 15. We will establish a pickup location for the shirts. If you cannot coordinate a pickup or are not one of the first 40 runners, please try to wear something purple and help us “turn Charlotte purple” for Taylor on race day.
If you are running the half marathon, you are invited to join my guide (Andrew Swistak), Dr. Steven Gray of the UNC Gene Therapy Center and me. I will receive an early start time (7:15 a.m.) for safety; the official start time is 7:45. Our estimated pace is 9:00/mile, and we expect to be alone on the course for approximately eight miles before the leaders catch us. If you start early, you will not be eligible for awards.
If you are running the half marathon, the crowd at the official Taylor’s Tale cheer station will give you one last boost of energy on the final mile, near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. Keep your eyes and ears peeled for a bunch of people wearing purple and jangling cowbells!
Optional: remember why you run! Shirts will be screen printed with “Team Taylor’s Tale” and our website on the back. Save a few breaths to tell fellow runners and spectators about Taylor’s courage and our fight against rare diseases.

If you’re cheering:

Taylor’s Tale will have an official cheer station sponsored by Michelob Ultra. It will be located on mile 12 of the half marathon course near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. This is a prime location about one-third of a mile from the finish line. View a course map here.
Supporters will receive free Michelob Ultra and cowbells.
Arrive by 8:30 to get settled and ensure that you don’t miss Andrew, Steve and me as we run by en route to the finish line!
IMPORTANT: Runners will vote on the best cheer station, and the winning station will receive $1,000 to donate to charity! You can help us win $1,000 for Taylor’s Tale and the fight against Batten disease. To learn more about the contest, click here.

If you can’t make it to Thunder Road:

Running a race blindfolded to commemorate the five-year anniversary of Taylor’s first 5K is the best way I know to honor her determination in the face of the world’s most tragic disease. But being part of finding the treatment that saves people like Taylor would be the ultimate way to honor my sister and others like her. Even if you can’t make it to Thunder Road, you can be part of the fight to save lives.
I’m running Charlotte’s Thunder Road Half Marathon to support gene therapy research at the University of North Carolina at Chapel Hill (UNC). We announced funding for this important work on Rare Disease Day this year (Feb. 28) along with a coalition of other non-profit organizations, all founded by families fighting Batten disease. This work holds incredible promise for not only Batten disease, but many other devastating illnesses including Alzheimer’s disease, Parkinson’s disease and ALS (Lou Gehrig’s disease). If funding continues, we could have a clinical trial for kids like Taylor in just a few short years.
To make a gift and help keep the dream alive at UNC, click here. You can make a gift online or by mail. Taylor’s Tale is a 501(c)3 non-profit organization, and gifts are 100 percent tax-deductible.

That’s it for now, but stay tuned for last-minute details. I hope you can join us on the road!

Crunch Time

Published: November 2, 2013 ~ 1

By Laura Edwards

Two short weeks from now, the finish line of the Thunder Road Half Marathon will be behind me. After five months of training and countless lessons about my sister’s dark world, it’s hard to believe that it’s almost here – and that once we cross the first timing mat, the journey of a lifetime will be complete in about two hours’ time.

We’ve gotten some great media coverage and have more on the way. If you live in N.C., pick up a copy of the November issue of Endurance Magazine. Taylor’s amazing story of courage on the race course made the cover! Click here for a note from the editor about the article. The South Charlotte Weekly ran a nice article a few weeks ago. The Charlotte Observer will print a story about our upcoming race tomorrow. We have more TV coverage on the way as well.

Wednesday night just before 10:30, Andrew and I embarked on a 4.11-mile run on the twisty streets of our neighborhood. Encumbered by the cul-de-sacs, speed bumps and rumble strips that have accompanied so many of our training runs, we checked in at a 9:43/mile pace. When my friend and guide dropped me off at my mailbox at the end of the run, I didn’t have a scratch on me and had two healthy ankles – both good signs. I haven’t fallen since my crash landing in mid-August – still my only accident throughout five months of training for Thunder Road. But as I read and reread the stats for our run, I knew I wanted to get FASTER.

10-mile run

This morning, Andrew and I headed to an office park area south of our neighborhood – the site of my longest blindfolded run to date – for just our second daytime run. I strapped on my new Camelbak water bladder pack; crowded water stations aren’t the place for a blindfolded runner, and the pack is a great solution for my hydration needs and all of the other random things I need for a long run (license, health insurance card, Shot BLOKS, etc.).

I wanted to run 10 miles today. The last time we went to the office park, we ran up and down one road that has light traffic on Saturday mornings, hills to train for Thunder Road (not known for being flat) and a chance to practice our turns. Andrew asked me if I thought I’d get bored running the same stretch for 10 miles, to which I responded, “It makes no difference to me!” After all, when you’re blind, the scenery’s all the same.

Running in a dark world as the fog lifted to reveal a bright, sunny day in Charlotte, I could have let my imagination take me wherever I wanted to go. But I stayed grounded, both for safety and to remember every moment of what may have been the last time I put on a blindfold before race day. I felt the sensation of cars as they passed, even though they moved to the center lane to give us room (we didn’t have any encounters like the first time we ran on that road, when a driver in a Porsche flew by and scared me so badly that I jumped into Andrew and almost knocked him over). I felt the “corrugated” texture of the bridge of the interstate beneath us and asked my guide to help me avoid the painted white lines on the road, because they felt slick.

Andrew 10-mile run

I also heard the voices of other walkers and runners. Andrew narrated their reactions to the crazy blindfolded girl wearing a purple backpack, most of which began as shock, then changed to slow recognition and finally a big grin and, sometimes, a thumbs up or a wave. We stopped to talk to two of the runners, one of whom teaches at The Fletcher School, the school Taylor attended for six years. I didn’t realize until later that without even thinking about it, I removed my blindfold long enough to say hello – which Taylor couldn’t have done. It felt like the polite thing to do, but when I pull that blindfold over my eyes, I really do want to blind myself – to experience my sister’s world and to remove all of the privileges that come with being sighted. I don’t intend to take off the blindfold at any point during the race. I’ve solved the water station issue, but more recently, I’ve thought about awkward things like restroom breaks, and whether or not I can skip them for 13.1 miles. I can hold it for 10. I think I’ll just force myself to hold it for 13.1.

Andrew and I reached our goal, after all. We logged 10 miles, my longest blindfolded run by far. We hit about an 8:45/mile pace, good for 1:27:42 even with a couple of stops for SHOT Bloks and the quick visit with Andrew’s friend from Fletcher. My PR for ANY 10-mile run is 1:20, set at the Tar Heel 10 Miler this April. So I feel great about what we accomplished this morning!

I’ll share a secret with you, too: for a brief period of time during today’s run, Andrew cut me loose. I ran down the center of the quiet street, the bungee cord that is my lifeline coiled up in my left hand, my guide just a few steps away. I picked up my speed, and I felt free as a bird. During those fleeting moments, I felt my sister’s presence. And I didn’t fall.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.